This was already announced over on the CFS forum http://forums.aboutmecfs.org/forum.php but I wanted to post it here because I spoke with the organizer and told her some lyme patients might be interested. Some of you may have heard about the preliminary success that Dr. Paul Cheney has had with CFS patients getting stem cell transfusions over in Panama and Costa Rica. So far, he has had a few outright cures and many with significant clinical improvement. I will post my summary of these results after this. The most promising result for me was that some XMRV-pos patients were XMRV-neg post transfusion. Many in the CFS community agree that stem cells are one of the most promising therapies readily available right now, but the cost (15-20k) has been a major deterrent. I've spoken with a few lyme patients (Amy and Monica) that have gone to India for embryonic stem cells, so I know stem cells are on the radar for lyme patients as well. It's difficult to say how cord stem cells stack up next to embryonic, but I think the consensus coming out of CFS/LLMD clinics is that cord cell are far more effective than autologous (extract our own stem cells, culture and multiply, infuse back--Moraga is an example). Autologous has reaped huge improvements for musculoskeletal conditions such as arthritis though.

Molly29 is a CFS patient that went to Panama last year. She was bedridden prior to going and is now working full-time again at a very stressful job. Due to her own experience, she set out to negotiate a group discount so that more of us can afford the treatment and managed to get a group discount of 10k each if we get at least 10 people (no upper limit). Many of us have already signed up (myself included), but I wanted to make sure that lyme patients did not miss out on this opportunity.

Please message Molly if you have any questions. She is very helpful about answering any questions as long as you are respectful. Please remember she is getting no kickbacks on this deal and taking time out of her "normal" life to help us patients. You may need to register on the CFS forum in order to message her: here is her profile--

I also believe, if my memory serves me right, that m0joey had some sort of financial stake in promoting that miracle treatment. Unfortunately, his remarkable improvements seem to have been short lived, thus the need for this new Central America stem cell therapy trip.

I smell some more remarkable improvements ahead for m0joey, how about you LymeHystorian? I wonder if he'll be sharing the joyous news on as many forums as possible, maybe blogging.

You know what they say: the best predictor of future behavior is past behavior.

Our (LymeLand) pal m0joey.

(edited to add "Stem Cell Therapy" to topic header)

Last edited by Claudia on Mon 7 Jun 2010 17:49, edited 3 times in total.

CBS's "60 Minutes" has aired a half-hour report about stem-cell treatments claimed to cure cancer, amyotrophic lateral sclerosis (ALS), multiple sclerosis, and Parkinson's disease. The treatment is marketed by Lawrence Stowe at Stowe Bio Therapy in La Mesa, California and administered in Mexico at the "Rio Valley Medical Center" operated by operated by Frank J. Morales, whose medical degree came from CETEC, a Caribbean school that was later shut down for selling diplomas. After a hidden camera taped them trying persuade an ALS patient to pay $125,000 for a"permanent fix," a CBS producer confronted the pair about what happened. 21st century snake oil: "60 Minutes" cameras expose medical con men who prey on dying victims. CBS News, April 18, 2010]....

Stem cell therapy has great potential, but no commercial clinics should be regarded as trustworthy. A researcher affiliated with the International Society for Stem Cell Research has found more than 200 of them marketing through the Internet....

(CBS)Con men used to travel town to town hawking medical remedies said to be made of Chinese snakes. Snake oil was useless and dangerous. So the FDA was created to put a stop to it and other food and drug scams.

But, today, quack medicine has never been bigger. In the 21st century, snake oil has been replaced by bogus therapies using stem cells. Stem cells may offer cures one day, but medical charlatans on the Internet are making outrageous claims that they can reverse the incurable, from autism to multiple sclerosis to every kind of cancer.

Desperate people are being bilked out of their life's savings.

We've been looking into this surging crime and we found there is no better window on how it works than the practice of a man who calls himself "doctor," a man named Lawrence Stowe.

Stowe has been unaware that, lately, some of his patients have been working with 60 Minutes.

Web Extra: The Promise of Stem Cell TreatmentLarry Goldstein is one of the nation's leading researchers in stem cell treatment. Despite the scam exposed by "60 Minutes," Goldstein believes that legitimate stem cell research will yield tremendous rewards.

I did treat with the bionic and documented each step of the way meticulously on my blog. I never once used the word cure, but I did feel somewhat improved on it. Also, you are probably the first person that has accused me of having financial ties to the product or the doctor (that I've heard of anyway)..I think you are getting me confused with another member on lymenet.

I Also, you are probably the first person that has accused me of having financial ties to the product or the doctor (that I've heard of anyway)..I think you are getting me confused with another member on lymenet.

Well, I hope that you understand that some of us have been around for awhile, (and as they say, "it's getting late in the day")...so, when we see people engaged in pushing fairly obvious attempts to take advantage of others who are hurting and desperate, me, I tend to wonder:

1. Is this person a completely immoral lower than whale-s**t in the ocean crook? Or...

As far as I'm concerned, the people I nearly bankrupted via that trip to Germany share my last name. I was as upset as anyone that the bionic didn't cure me given the stories that propelled me to go, but I didn't go on a whim: I did my research and made a calculated decision to go, so I take full responsibility for what happened and didn't happen. It just so happened that I had much more going on than lyme disease (I later tested positive for the XMRV retrovirus via VIPdx). The fact that I felt somewhat better treating with the machine before even treating what seems to be more of an underlying issue than lyme disease speaks volumes to me. Also, all other 3 people that went with me to Germany (that were more classic lyme patients) improved to various degrees--all 3 are living normal lives again. I wish I could say the same. If anyone should be jaded about being preyed on by miraculous claims, it should be me. But no, I took responsibility and moved on and I invite all you creative minds to stretch the other way and do the same.

I would politely X out all your unoriginal suggestions, and repeat that it is each patients' responsibility to do their own due diligence about any experimental treatment and take any testimonials with a grain of salt. I've been researching the stem cells at panama for over a year now, and I've heard enough clinical evidence from Dr. Cheney's patients to think a tax-deductible 10k is a bargain for 30-50% improvement for anyone that hasn't recovered from the allopathic treatment of choice (LT antibiotics, antivirals). Once again, I never said this treatment will cure you, but yes I did say it cured 3 Cheney patients out of 20 and rendered 2 of them XMRV-negative from positive. A 15% cure rate? Hardly a hard sell.

I'm not going to withhold discussing a treatment online or publicizing a group discount for a treatment just because a clinical trial hasn't been done on it and/or it behooves the patient to do their own heavy lifting before signing on.

As far as I'm concerned, the people I nearly bankrupted via that trip to Germany share my last name.

Ouch. That could mean some rather awkward moments at family picnics.

Also, all other 3 people that went with me to Germany (that were more classic lyme patients) improved to various degrees--all 3 are living normal lives again.

I have noticed a cessation in my Lyme symptoms since I stopped getting pepperoni on my pizza.

Also...extra cheese on pizza seems to help, too...

I am thinking about blogging about it. I definitely would have to say that I stand firmly with "extra cheese". Yes. There seems to be a definite connection in my mind.

I would politely X out all your unoriginal suggestions, and repeat that it is each patients' responsibility to do their own due diligence about any experimental treatment and take any testimonials with a grain of salt.

And I would tell you that it is one thing... if you want to recklessly and carelessly experiment on your body...and a completely different thing if you are online encouraging others to do the same...and to the tune of thousands of dollars... and then try to hide behind little comments like it is their "responsibility to do their own due diligence".

Did you bother to read the post that Rita put up just before yours? Did you happen to see the 60 Minutes piece? Please notice the word "FRAUD"...

I'm not going to withhold discussing a treatment online or publicizing a group discount for a treatment just because a clinical trial hasn't been done on it and/or it behooves the patient to do their own heavy lifting before signing on.

Oh, I see.

So, it's pretty much "buyer beware", you think? You think that's a viable defense? You bear NO responsibility at all? It's all their fault if you are completely WRONG?

Gee, I wonder if the Feds will agree with that if they ever get around to looking into this sort of thing...

Also...I noticed that you said that:

"Also, you are probably the first person that has accused me of having financial ties to the product or the doctor (that I've heard of anyway)..

Does that mean that you do NOT have any "financial ties" to the product or doctor? Or just that Claudia was the first person to suggest that? I would appreciate an answer so that I can get that "either, or" thing settled...(Somehow, I doubt that she will be the last).

I have no financial ties to the Bionic, the stem cell clinic, or any other therapy I've ever done. I really wish I had, it could've saved me a ton of awkwardness at family dinners, let alone picnics.

Thanks for your answer.

Sorry, though. If you recall, it was an "either, or" proposition...

Just a quick "Google" on this Cheney character...(this just cracks me up):

LYME DISEASELyme disease is caused by a spiral bacterium transmitted by the black-legged deer tick and the flu-like symptoms can include fatigue,headache and stiff neck, fever, malaise, muscular and arthritis-like pains in the joints and swollen lymph nodes, as well as a characteristiccircular or “bulls-eye” erythema that usually appears three to ten days after infection. If treated early enough with antibiotics most peoplerecover completely, but some will have prolonged symptoms, especially the fatigue, malaise and muscular and joint pains. Some peoplewill develop chronic, severe and disabling malaise, fatigue, musculoskeletal pains, neurologic and even cardiac disease. A large numberof people are reporting that VITALYTE helps greatly reduce early flu-like symptoms and provides relief from the prolonged symptoms ofthe flu so that they are much more functional. This should make sense when you consider the ways in which VITALYTE relieves similarsymptoms of flu, chronic fatigue and fibromyalgia. If you or someone you know is suffering from Lyme Disease, it should be worth givingVITALYTE a try.

Oh, look...and there's more...(does it seem like there's a modus operandi with these guys? Always with the books and the lectures and the online websites)...here's an unsolicited (pretty sure about that) "testimonial":

"I saw Dr. Cheney for almost 2 years from about 1999 to 2001. He was of course extremely expensive. He was not particularly effective in treating me...

His fees, however, were just devastating; at one point I got $1300 bill for a phone call; $500 to read my e-mail and the rest to converse with me".

($500 to read an e-mail? What the hell? Does he think he is a lawyer)?

The book “Desperation Medicine,” and the website where it can be ordered, http://www.chronicneurotoxins.com, contain intriguing information about a test and a treatment to detect and remove neurotoxins being generated within our bodies. (Find this information summarized in the October '01 issue of The DFW Lighthouse newsletter.) The toxins end up in the brain (thus, neurotoxins) and other organs of the body.

Used by the toxicology division of the Environmental Protection Agency, many in our group took this test at the Dr. Raines seminar in December. The test is simple, inexpensive, quick, and non-intrusive. You just look at a card with a series of lines of varying shades of gray and indicate whether they are vertical, left-leaning, or right-leaning. It is the visual equivalent of a hearing test, detecting what frequencies you can and cannot perceive. It’s called a VCS test: visual contrast sensitivity test but is sometimes also called a FACT: functional acuity contrast test.

Dr. Cheney talked at length to the company that makes it, Stereo Optical Co.(800.344.9500). The test equipment costs $275. Doctors typically charge about $25 for the test.

Dr. Cheney explained that trouble perceiving mid-range frequencies indicates the sub-cortical/deep brain injury typical of CFS, problems perceiving low frequencies indicate cortical injuries such as Alzheimers, and problems perceiving high frequencies indicate injury to the retina or optic nerve. These visual problems are usually very subtle and not at all apparent apart from the test. He found it to be a very intriguing test, has ordered it, and will be incorporating it into the tests given at his clinic.

The treatment recommended in the book and website is 4 scoops daily of Questran (cholestyramine) on an empty stomach, an old cholesterol drug. It is not actually absorbed—it never enters the system. It stays in the gut; binding and then eliminating fat-soluble toxins that otherwise are reabsorbed and circulate repeatedly throughout the body. (Lyme patients take pioglitazone/Actos to minimize the terrible herx; however, this drug makes CFS patients worse.)

After much investigation and a long conversation with the book’s author, Dr. Cheney believes that this may be a helpful tool in the treatment of CFIDS.

However, he will implement the protocol somewhat differently. He feels that, like any aggressive detox agent, it could mobilize too many toxins too quickly. Dr. Cheney will use much, much lower doses. Start low and build slowly, is what he said. I think he said that he had started his first patient out on ¼ teaspoon at bedtime.

See, while it may sound good to go to some foreign country and get some complete (and probably unlicensed) stranger to shoot you full of God-only-knows-what...

...I think what we really gotta do is get Michael J. Fox involved. Yeah, and he will talk to Oprah, who will talk to Dr. Oz...who will talk to Michael Moore...and then, everything will be just fine and kick-a** dandy.